"The AIDS
Exception: Privacy vs. Public Health" (June, 1997, Atlantic),
in which I made the case for a traditional public-health approach to AIDS, was
the most difficult piece of reporting I have ever done. In various parts
public
health, medicine, law, science, and culture, the subject is highly
resistant to
empirical assessment. But in the end, given the data I present in the
magazine,
two things struck me. The first is that a quiet sea-change is now going on, as
indicated by the comments of an infectious-disease specialist and AIDS
physician at a prominent East Coast hospital who is himself gay and who
whispered to me at a recent dinner party that it is time to stop treating AIDS
as a political phenomenon. "It's still difficult to say out loud that, in the
end, AIDS is a disease," he said, "but we're starting to say it."

The other thing is as difficult to quantify journalistically as it is
important
to note: fanatical adherence to one's position. A heterosexual Los Angeles
AIDS
doctor with whom I spoke has done studies clearly showing that
partner-notification programs identify more infected people and bring them
into
treatment earlier (when their prognosis is better). Yet he works against the
constant opposition of AIDS and gay activists. "When they hear the words
'partner notification' they just freak out and come after you," he told me.
"But this is what the studies show." After nearly two years of professional
interaction with numerous exceptionalists, I am still astounded at the
dogmatism of many of them.

Joel Gallant responds:"Chandler Burr is justified in objecting to
the dogmatism of some exceptionalists.... But Burr and Coburn are guilty
of a different type of dogmatism: the assumption that public-health
approaches to infectious diseases are monolithic and unalterable, that they
should be routinely applied to all transmissible diseases, and that they
are equally effective in every case."

There is a constant, suspicious whiff of fanaticism
present in the repetition of unverifiable hypotheses, apocalyptic scenarios,
and imputations of invidious motive. For example, the possibility that Tom
Coburn proposed the HIV Prevention
Act of 1997 (which would require, among
other things, confidential HIV reporting nationwide) for any reason other than
hatred of homosexuals is simply not entertained. But as a homosexual
journalist
who has spent significant time talking with Coburn about his bill, I believe
that this is simply paranoia; as far as I can tell, Coburn's motivation is
protecting the public's health.

Chandler Burr
Burr is the author of A Separate Creation: The Search for the
Biological Origins of Sexual Orientation (1996) and the creator and
moderator of The Gay Gene, a
Web site devoted to the biological research of sexual orientation. His
argument for reinstating traditional rules of public health for fighting
AIDS, "The AIDS Exception: Privacy vs. Public Health" appears in the June, 1997, issue of The
Atlantic.

Winnie Stachelberg
Stachelberg is the legislative director of the Human Rights Campaign, the
nation's largest lesbian and gay political organization. She leads a team
of professional advocates in formulating and advancing HRC's legislative
agenda on Capitol Hill.

Tom Coburn
Coburn represents Oklahoma's 2nd Congressional District in the U.S. House
of Representatives. He recently introduced the HIV Prevention Act of 1997
which, if it passes, would require more HIV reporting and partner
notification. He is also a practicing family physician who specializes in obstetrics.

Joel Gallant
Gallant is an assistant professor of medicine in the Division of
Infectious Diseases at the Johns Hopkins University School of Medicine and
is the director of the Moore HIV Clinic at the Johns Hopkins Hospital.

* * *

What do you think?

Join the debate in The Body
Politic. In Round Two
(coming June 18), participants will respond to selected reader
responses.

There are many exceptions -- I would cite the ACLU's Matt Coles as
one example
of a committed exceptionalist who makes his case with patience, intelligence,
and the acknowledgment that he might, just possibly, be wrong. But overall
many exceptionalists' hypothetical arguments, and their tone, consistently
remind me of the feeling I get while reading about the ultra-conservative
militia groups, which serves to reinforce in my mind what the data
indicate: we
need a fundamental reevaluation here. To quote The Atlantic's editors,
"Some will angrily demur [from traditionalist arguments]. We would argue that
with lives at stake, scrutinizing orthodoxy from time to time is simply
prudence."

This orthodoxy (the word's theological sense is not completely out of place
here) deems current public-health approaches a success even though an estimated
500,000 people are infected with HIV and don't know it. Only true believers
could argue this. We do not use disease control for the flu. Why? Because
it is
so easy to catch and because it is
rarely fatal. On the other hand AIDS -- which is quite difficult to
catch as
diseases go -- is a perfect candidate for disease-control methods. To
implement
them, however, we need to know who is and who is not infected.

Winnie Stachelberg responds:"Burr seems to believe that the government,
by means of a woefully under-funded and under-staffed public-health system,
must force people to 'do the right thing' (that is, get tested, notify
their partners, change their behavior), because, left on their own, people
won't do it themselves. The evidence, as I have cited and Joel Gallant has
indicated, does not back up that assumption."

The orthodoxy then repeats the exceptionalist article of faith that
finding out
who is infected (confidential name reporting) and disease control will "drive
the epidemic underground." Let's grant for the sake of argument that this will
happen. I counter that exceptionalism itself makes this happen. Convince the
population that they will be grievously injured if they cooperate in the
public-health procedures necessary for stopping the epidemic, and inevitably
this conviction will become that population's central fixation, despite the
objective fact that confidentiality violations have been rare and that
powerful, clear civil-rights protections are on the books. The protections are
not perfect -- they are unwieldy in the way the law is always
unwieldy -- but
once one has been infected with AIDS perfection is no longer an option and
demanding it is an absurdity. The public-policy challenge is to fight the discrimination at the same time
that we fight the virus, not to assume the permanence of the discrimination,
exalt it, and argue backwards from there against effective disease control.

I am a 33-year-old gay man whose entire adulthood has been lived during the
AIDS epidemic and who has been thoroughly immersed in the orthodoxy by the
AIDS
leadership. My coming out in 1988 included my first test for HIV (I
tested, and
today test, negative). I made certain, because it had been drummed into my
head, to go to the Whitman Walker Clinic in Washington, D.C., where testing is
anonymous, as opposed to confidential (in which case your name goes to the
public-health authorities, giving them more precise data and the ability to
follow up on you personally if warranted). I had no thought for anyone else's
health because I had been taught to have none. The problems of disease control
in the general population were no more relevant to me than they were to the
exceptionalist public-health policies of the clinic or the city that
tested me.
This is appalling selfishness. AIDS is not merely my personal problem cum
civil-rights issue. AIDS is a disease, and my HIV status has implications for
people other than me.

Cullen Murphy's last question -- forcing Tom Coburn and me to
identify the most
telling exceptionalist argument -- is an excellent exercise, because
the fact
is that exceptionalists, in what they have done with AIDS, have made an
immense
and important contribution to effective public health: we now understand that
AIDS is more than just the microbes that make up a disease. Traditional
methods
are indeed effective on microbes, but AIDS has taught us that these methods are, by
themselves, insufficient, and that we need to deal with people in all their
complex, infuriating, illogical manifestations. Good public health includes
protecting civil rights, using mass-media campaigns to create behavioral
change, and increasing our focus on preventative health, such as
needle-exchange and prenatal-care programs.

As an AIDS doctor said to me, "In the end, the HIV and STD epidemics are
unnecessary. No other industrialized country has these problems:
industrialized
Europe and Australia and New Zealand have gone after these diseases with
traditionalist methods and with non-traditionalist, new methods supported by
the exceptionalists, and have essentially taken care of them. Sweden does it
all: they do needle exchange and contact tracing, and at the same time they do
drug treatment on demand and absolute protection of civil rights and access to
health care. You've got to have the whole package. The U.S. is doing a miserable
job by any standard: we have not taken the tough traditional public-health
steps that are necessary to contain AIDS, and we haven't instituted the new
policies pointed out by our experience with this disease."

I have questions, though, for Coburn about his proposed HIV Prevention Act,
which, if passed, would result in a more traditional public-health policy for
HIV/AIDS. I once asked Coburn why he opposed needle exchange and cited a
National Academy of Sciences study reported on the front page of The New
York Times that found it effective in slowing HIV.
His response was simply "I haven't seen it." I want him to give me a better
response. AIDS activists deplore the provision of his bill that gives doctors
the right to test patients or to refuse to perform certain medical procedures.
When I asked him about this he made an excellent case that its purpose, in
fact, is to protect patients -- if doctors do not know their patients
are HIV-infected, they may prescribe a contraindicated drug, with devastating effects.
Yet the actual bill talks about any "medical procedure that would place the
health [italics mine] professionals at risk." I want Coburn to
address this.

Tom Coburn responds:"To answer Burr's question about the part of
my bill that covers doctor-patient relations, physicians should ideally
have the right to test any patient. This protects patients because it
assures that any procedure performed is made with knowledge of patients'
HIV status, protecting them from unnecessary complications."

And I want him to justify to the public why, although his bill will identify
many infected people, many of them uninsured, he does not support universal
health coverage in a country with an estimated uninsured population of fifteen
million.

But the fact that these things need to be addressed does not invalidate
Coburn's bill. It is part of "the whole package," as much as the AIDS
activists
might dislike it. The test, I believe, of both the tenor and rigor of the
exceptionalists' arguments will be their response to a balanced, thoughtful,
whole-package assessment of public policy and AIDS. Exceptionalism has
contributed greatly to public health. And AIDS, particularly in the 1980s, was
a huge civil-rights issue as well as a disease. But vested self-interest and a
static view are deadly to exceptionalists like Winnie Stachelberg and
traditionalists like Tom Coburn alike. The question is: Will they both be able
to put the whole package together?

Rather than frame the debate over HIV/AIDS prevention by posing "pragmatic"
(and supposedly successful) public-health strategies against "principled" (but
supposedly less successful) ones, we should think solely in terms of disease
prevention and management. How to address the challenges posed by the AIDS
epidemic is neither a question of pragmatism nor principle. It is, plain and
simple, a question of public health. To continue to discuss the epidemic in
other terms does a disservice to all of us trying to combat this deadly
disease.

It is of great concern that half of the people living with HIV in this country
do not know their status. We must do all we can to encourage people to get
tested; a widespread social-marketing campaign is essential. But equally
important is access to testing sites at which people can voluntarily (and, if
necessary, anonymously) ascertain their HIV status. As this epidemic
nears its
third decade better targeted-education programs, better access to care and
treatment (including drug treatment), and better needle-exchange programs are
absolutely required.

Those who advocate mandatory testing, named reporting of infection, and
partner
notification as examples of more strenuous public-health efforts believe that
we are worse off because we have not employed these methods in the past. The
truth is that twenty-six states have HIV-reporting laws and that all fifty
states have partner-notification programs in place. Those strategies are not
panaceas, however; they have not proven to be the answer in stemming recent
surges in diseases such as syphilis and gonorrhea. The CDC has reported that
since 1989 the rates of primary and secondary syphilis have increased by at
least 40 percent across the United States and by up to 293 percent in some
urban areas.

Tom Coburn responds:"Today we have the
lowest number of syphilis cases since the 1950s. Public-health officials
credit aggressive partner notification as one of the fundamental means of
accomplishing this dramatic reduction. In denying the role of partner
notification in syphilis's decline, Stachelberg discredits her arguments."

While the provisional 1996 data suggests that new cases of
syphilis have fallen, the reasons cited include the cyclical nature of the
disease and more aggressive treatment efforts by state and local health
officials. The assertion, therefore, that these more "strenuous" public-health
measures will automatically reduce HIV transmission is based on faulty
assumptions about the efficacy of these strategies.

While it is true that the recent developments in treatment regimens offer hope
to many people living with HIV, those regimens do not constitute a cure, are
hugely expensive, and, given the nature of our health-care system, are not
available to all who may benefit from them. Identifying and reporting a
person
as HIV-positive in and of itself does not in any way promote the changes in
behavior which remain the only successful means of preventing HIV transmission.
Nor do identification and reporting guarantee access to medical care. Given
those limits, why is it so important to the traditionalists that the
government know who is and who is not HIV-positive? Until the traditionalists can answer that question the HIV/AIDS community will rightly remain opposed to any efforts that force people to provide that information.

The traditionalists underestimate the complexities of HIV infection and the
impact that mandatory partner notification and the creation of a list of
people
living with HIV will have on the willingness of people to come forward and get
tested. When the state of Oregon switched from confidential

Chandler Burr responds:"The public-health orthodoxy defended by
Stachelberg and exceptionalists like her is not, at its most fundamental
level, about the containment and eradication of communicable diseases in
populations. It is about civil rights. It is about protecting people from
political and emotional violation and not really about protecting them from
disease."

name-reporting to anonymous testing, the number of individuals seeking testing
increased significantly. A recent study of HIV-infected drug users found that
63 percent of those interviewed would not reveal the correct names and
addresses of their partners owing to social stigma, rejection, and other
factors. A recent study of Baltimore health-care providers revealed that 24
percent of those providers had at least one female patient who experienced
physical violence following the disclosure of her HIV status to a partner.

The public-health system must have the trust and cooperation of those at risk
for HIV infection in order to intervene successfully. Many public-health
departments have developed that trust and fostered that cooperation by
recognizing the concerns that people in the HIV and AIDS community have
expressed over time. This partnership has led to strategies that track and
prevent HIV infection. The traditionalists call these strategies
"alternative"
or "exceptionalist"; those fighting on the front lines of this epidemic call
them effective. These strategies are based on a community-prevention planning
process and include: culturally specific, long-term prevention programs
targeted
toward at-risk communities; voluntary testing; unique, non-named
identifiers to
report HIV; the availability of anonymous test sites; and voluntary,
non-coercive partner-notification programs that recognize complex social
dynamics and are sensitive to the needs of historically marginalized
communities.

The efforts of the HIV/AIDS community have led to many improvements in how
this
country deals with complicated social and health issues, including faster
approval of new drug treatments, creation of high-quality systems of care,
coordinated research efforts, and prevention programs that work. These are the
result of a healthy questioning of "how things have always been done" and of
the partnerships that have developed among and between affected communities,
public-health experts, government officials, and elected leaders. The
programs, policies, and strategies that these partnerships have created,
including HIV-prevention efforts, should be evaluated based on what works at
the local level and not on someone's definition of "traditional" strategies,
the success of which is spotty at best.

The most telling insight of the traditionalists is their argument that the
nature of HIV is changing. They correctly assert that using
AIDS
as the marker for studying this epidemic is not as useful as it once was.
Newly available drug treatments mark a sea-change in how individuals and
society as a whole view HIV infection. People are living longer with AIDS,
which means that deaths are decreasing. But this does not mean that new
infections are also decreasing. Without a system to measure HIV incidence we
are missing a key piece of information to combat the HIV epidemic into the
next
century. In order to understand the nature of the epidemic at the front end
of the disease progression, it is more important than ever to get
people into treatment earlier and to identify barriers to care.

Where the traditionalists go wrong is in using the need for "front-end"
data as
a justification for mandatory testing, name reporting, coercive
partner-notification programs, and the like. There are many ways to
obtain the
needed information without resorting to such strategies.

Chandler Burr responds:"Stachelberg makes the alarmist assertion
that traditionalists are promoting 'mandatory testing' for everyone. This
is a lie. No one who is at all credible is promoting this. Coburn is not -- as everyone who looks at his bill
will know -- and if this accusation is not leveled at Coburn, at whom is it
aimed?"

Maryland and Texas,
for example, have instituted systems that distinguish people with HIV by a
unique anonymous identifier. Other areas are using sampling methods and
laboratory-initiated case finding. A consensus is developing in the HIV/AIDS
community on the need for more and better epidemiological information, and
state and local health departments are working with their communities on the
best ways to get it. We should let that process take place without mandatory,
one-size-fits-all solutions to a very complicated issue. Let us allow
public-health officials and affected communities to decide at the local level
the best ways to move forward -- as we have since the epidemic began.

While no cure exists for HIV infection, we do know
enough about the virus to
prevent its spread. But we have failed to do so. The fact that about half of
the nearly one million people infected with HIV in the United States are
thought to be unaware of their status is proof that we have failed to
adequately address the HIV/AIDS epidemic.

Whether owing to principle or pragmatism, in dealing with HIV we have
abandoned
the public-health procedures that have been successful in curtailing other
epidemics. As Chandler Burr points out in his article for The Atlantic,
while AIDS cases must be reported by name in all fifty states, infection with
HIV does not. Why are reporting, notification, and other traditional
public-health policies so important to us "traditionalists"? Because they work.

Reporting to local health authorities the names of those infected with a
certain disease allows scientists to access and study that disease. It enables
those responsible for disease control to determine more accurately the extent
of an epidemic, rates of progression, direction of spread, possible changes in
transmissibility, and other critical factors. This information in turn allows
for the development of long-term strategies based on reliable data

Winnie Stachelberg responds:"Coburn implies that the CDC receives the
names of people living with AIDS.... The fact is that neither AIDS nor any
other disease is reported to the CDC with patient-identifying information.
Reporting of disease is a state-level function, which is where it should
remain, without unnecessary costly mandates from the federal government."

and the
development of effective and targeted prevention-education messages. Currently
more than fifty diseases -- including AIDS -- are reported to
the CDC.

Partner notification is important because it is the only timely way to alert
those in danger of infection. It allows for early medical treatment for those
who are infected and enables others to avoid infection.

The latest treatments now available for HIV make notification and early
diagnosis even more crucial. Many of the world's top scientists now believe that
with the right combination of drugs it may be possible to transform HIV from a
virus that becomes a terminal disease into a chronic disease like diabetes.
However, the success of these drugs depends upon starting treatment early.
Sadly, many aren't aware that they've been infected with the HIV virus until
they become sick with AIDS. By this point they have missed out on the medical
care that could have prolonged their lives, and they may have unwittingly infected
others.

When such therapies are available, who could deny those who have been
unknowingly exposed to HIV the right to know that they may be infected? If we
were discussing Ebola instead of HIV, would those against traditional
public-health practices still oppose reporting and partner notification?

As Cullen Murphy says, AIDS activists argue that these practices are
counterproductive because they may frighten those at risk from getting tested
and drive those who are infected underground. The fact is that there is no
evidence from any of the twenty-six states with partner-notification
requirements that reporting or notification discourages individuals from being
tested. (It should not be overlooked that these states also tend to have the
lowest number of HIV/AIDS caseloads.) North Carolina, for example, just
recently eliminated anonymous testing, and HIV testing increased by 45
percent.
These same arguments have been used against screening blood-bank donors,
military, Job Corps, and foreign-service applicants, and pregnant
women -- but
have never been proven true.

It could be true that some people with HIV/AIDS may choose to avoid the
health-care system, but that is not a strong enough argument to suspend proven
policies that do work and have been successful in controlling the spread of
epidemics.

I agree with the exceptionalist argument that because of the stigma associated
with HIV those with the disease have legitimate concerns about discrimination.
But diseases such as herpes, syphilis, gonorrhea, and tuberculosis all have
negative stigmas, yet they must be reported to local health authorities. That
is why every state has strict confidentiality laws in place for all medical
records. Some states have even enacted specific laws to protect HIV-status
information. The Americans With Disabilities Act also ensures additional
protections against discrimination.

While these laws cannot change people's attitudes, those with HIV can look to
the success of other

Joel Gallant responds:"Coburn's bill does not really address
the overarching problem [of AIDS] or attempt to remedy it in any
substantial way. Instead he proposes solutions to two much smaller
problems: that some who know they are infected are not telling their
partners, and that public-health
officials are not able to keep track of the epidemic."

disease-reporting efforts for reassurance of
confidentiality. Every state, for example, has reported AIDS cases to their
state public-health department and the to CDC for sixteen years, without incident.
Why would this change with reporting HIV?

I believe that the case for treating HIV infection the same as other infectious
diseases has never been stronger. That is why I introduced the HIV Prevention
Act of 1997, which would require HIV reporting and partner notification. The
bill has been endorsed by the American Medical Association and numerous
public-health officials across the country. Certainly it is not a cure for
HIV,
but along with new drug treatments it may be our best hope for fighting the
disease until a cure is found.

Our response to the AIDS epidemic has been woefully inadequate. One
need look no further for convincing proof of our deficiency than the fact that
the majority of HIV-infected Americans aren't aware they're infected. Had
certain
traditional public-health measures been applied at the onset of the epidemic,
they might have been effective in slowing the spread of HIV; even now,
implementing them would still be useful. Those measures that I support
are not coercive and
need not violate civil rights or lead to discrimination. They are
well-tested,
highly effective voluntary measures that we've merely paid lip service to for
the last decade and a half. They include education, drug treatment, needle
exchange, and widespread voluntary testing. Such approaches would undoubtedly
prevent and detect more cases of HIV infection and would be more
cost-effective
than the more coercive and involuntary measures now being proposed.

The reason that people don't know they are infected is not that they
refuse to be tested despite the earnest entreaties of physicians and
public-health officials. The acceptance rate for voluntary HIV testing is
extremely high when the reason for the test is explained and the issue
approached with sensitivity. At the Johns Hopkins Hospital, for example,
virtually the only pregnant women who don't consent to voluntary
testing
are those who already know they're infected. Physicians who suggest an HIV
test to their patients are rarely met with refusal. But usually patients are
never asked.

What keeps people from being diagnosed and treated is ignorance. In the
United States we've chosen to combat that ignorance with public-service
announcements that provide bland, meaningless slogans and 800 numbers, red
ribbons, and so-called "AIDS education" in the classroom. This education
censors discussion of what our children need to know: how one becomes infected
with HIV, and how one avoids it.

Our ignorance is further fostered by medical professionals who too often think
of HIV only in the context of the now obsolete "risk groups" of the 1980s.
Patients who come through emergency rooms and doctors' offices with sexually
transmitted diseases, pneumonia, shingles, and other infections that suggest
the possibility of HIV infection are still offered testing only if they're gay
men or intravenous drug users. By testing only those who are
members of so-called "risk groups" or by waiting until patients are sick, we
miss the diagnosis in a large proportion of the infected population at a stage
when treatment could offer enormous benefits. Closing this gap does not
require legislation; it requires greater awareness on the part of
clinicians.

I propose that before we resort to draconian measures to combat the AIDS

Chandler Burr responds:"[Gallant] opposes 'draconian measures
restricting the civil liberties of our citizens.' What draconian
measures? Please, we need a bit of perspective and absence of melodrama. Routine testing for a virus is draconian? What about for
the dozens and dozens of viruses and bacteria we routinely test for? This
fear is, at this point, simply self-perpetuating hysteria."

epidemic by restricting the civil liberties of our citizens we should first
try a few of the voluntary measures that have been so successful elsewhere but
that Americans have largely ignored. We should provide explicit and targeted
education about HIV prevention and the reasons for getting tested. We should
expand voluntary testing to new sites, especially now that HIV-test
results can
be provided immediately without the need for drawing blood. (We still don't
offer voluntary HIV testing in most inner-city emergency rooms, where the
seroprevalence is shockingly high and where a large proportion of people at
high risk for HIV infection obtain their primary care.) We should admit that
adolescents are sexual beings who will not become more sexual by learning how
HIV is transmitted and prevented. We should recognize that needle
exchange and
drug treatment don't require more study; rather, they work and should be
implemented. We should help clinicians to expand their notions of who
might be
infected, and we should teach them how to discuss sexuality, drug use, and HIV
infection in a sensitive way that won't alienate their patients.

There are certainly precedents for restricting civil rights in the name of
public health. We can still lock people up if they have active tuberculosis
and refuse to take their medications, for example. Such measures are
justifiable when an individual knowingly and willfully places the public
health
or the health of another in jeopardy. But most people take their medications
and don't need to be locked up. As a physician in Maryland I have the
right to
inform my patients' sex partners of the patients' HIV status without their
consent. In seven years of caring for HIV-infected patients in this state
I've
only had to do that once -- when my patient refused to do it himself.

I'm as concerned about the failure of our public-health response to the AIDS
epidemic as the most hardened "traditionalist." And I'm not such an
"exceptionalist" that I would oppose more coercive measures if I were
convinced
that they were the only way to stop the spread of HIV. But our society's
puritanism and eagerness to view disease as a moral issue have prevented us
from attempting a number of basic prevention efforts that are both voluntary
and effective. Until they are tried and have been shown to fail, the call to
suspend civil liberties seems premature.

Response to Question Two

Partner notification and contact tracing are important, but efforts
to make
them more systematic and non-voluntary are unlikely to be either effective or
cost-effective, and may in fact be counterproductive. Let's look at examples
from the real world.

Intravenous drug users can be asked to divulge the names of their
needle-sharing partners, but it seems rather far-fetched to expect a high
yield
from that approach. Even assuming their partners are known to them, which is
often not the case, the current legal and moral climate with respect to drug
use would understandably inhibit most people from being forthcoming to a
public-health official. Infected
individuals can simply state either that they don't share needles or don't
know
the names of their needle-sharing partners, and the so-called contact-tracing
process comes to an immediate halt.

In most cases tracing and notifying sexual contacts presents a similar
problem. Unless a patient is legally married, our ability to identify sexual
contacts is dependent entirely on the patient's willingness to divulge names.
That leaves us with the rare case of the married couple in which an
HIV-infected husband refuses to inform his wife, or vice versa. I suspect
that
most legislation involving mandatory partner notification is driven
entirely by
such cases, which make for exciting headlines or day-time talk-show
discussions
but occur only infrequently.

Of course, mandatory
partner-notification legislation has an additional cost, since it may
discourage some individuals from getting tested. Let's imagine the case of a
married man who fears that he acquired HIV infection from sexual encounters
with men which his wife is not aware of. Imagine the enormous
psychological barriers he faces as he considers getting tested -- fear of
learning that he's HIV-positive, guilt over the possibility that he may have
infected his wife, anxiety that his sexual preference will be revealed. Now
add to those barriers the certainty that if he is HIV-positive, his wife will
be notified by the public-health department. That last barrier may be the one
that keeps him from being tested. Whether or not one can feel sympathy for
this man's predicament, the potential for delay in testing further jeopardizes
not only his own health but that of his family. Under the current system the
fear and anxiety associated with being tested and being informed of a
diagnosis
of HIV infection can be separated from the anxiety associated with partner
notification. Partner notification can then be addressed at a more
appropriate
time by counselors or clinicians who have a personal relationship with the
patient.

Another example of misguided and counterproductive approaches to HIV
prevention and detection is the mandatory testing of pregnant women.

Tom Coburn responds:"The HIV Prevention Act does not mandate
involuntary testing of individuals except in cases of rape and sexual
assault. The programs established under this Act will rely on the
voluntary cooperation of individuals in providing names of potentially
infected contacts for notification. This is now being accomplished
successfully in twenty-seven states."

The
acceptance of voluntary testing among pregnant women has been shown to be
enormously high. The acceptance of antiretroviral therapy in order to prevent
perinatal transmission is also high. Legislation designed to screen for HIV
among that small proportion of women who refuse testing can only serve to
drive
more women from prenatal care, which would almost certainly offset any
benefits
gained from the slight increase in HIV detection that could be expected to
result from such a policy. Furthermore, for involuntary testing of pregnant
women to be truly beneficial we would have to mandate forced antiretroviral
therapy of infected mothers, a step that I hope our society is not ready to
take. Meanwhile, despite the fact that the incidence of new HIV infection is
rising faster among heterosexual women than in any other group in the United
States, pregnant women are frequently not offered voluntary testing unless
they
are members of a traditional "risk group," a case-finding strategy that has
been demonstrated to miss a high proportion of HIV-infected women.

In short, leaving aside civil-rights issues, the benefits that could be
expected from mandatory partner-notification programs and other systematic
case-finding efforts would probably be marginal. At the same time, such
programs would be expensive, especially if examined in terms of cost per case
detected, and might lead to the opposite of the desired effect -- a
reduction in the number of people at risk who seek testing and treatment.

Response to Question Three

The traditionalists point out that society has changed since the early years
of the AIDS epidemic; therefore, exceptionalist arguments based on the fear
of discrimination are less persuasive now than they were in the 1980s when
such
discrimination was common and widespread. With each year the reasons for
making an exception of HIV infection become weaker. Furthermore, traditionalists argue
correctly that the health benefits associated with early diagnosis of HIV
infection are much greater now than they were ten years ago. Not only does
therapy for HIV infection delay progression of HIV disease, but it clearly
prolongs survival and reduces infectivity.

Such arguments have validity. The flagrant cases of discrimination, the hate
crimes, the shunning of HIV-infected individuals by their communities, have
thankfully become less common than they were in the 1980s. The law protects
those with HIV infection against some kinds of objectifiable discrimination.
The more subtle forms, while they still exist, have been rendered less harmful
by the sheer size of the epidemic. There is power in numbers, and in some
large urban areas HIV infection has become a fact of life, less capable of
inspiring the irrational terror and hatred that was once widespread.

As refreshing as societal changes seem, they are quantitative, not
qualitative. Discrimination against HIV-infected individuals still exists,
especially in communities where HIV infection is uncommon. People still lose
their jobs, are denied housing or insurance, and are ostracized by their
families when it becomes known that they are infected. Even with the best
legal
safeguards, ignorance is widespread and human error inevitable. Proponents of
mandatory testing rarely accompany their proposals with legislation
designed to
decrease the abuse of the information obtained or to prevent discrimination on
the basis of HIV status.

Even if legal or official forms of discrimination could be completely
eliminated, HIV infection would continue to carry an enormous social stigma
that might easily inhibit people from getting tested if their test results
were
more likely to be used in ways over which they had no control. If our goal is
to prevent the transmission of HIV infection and to identify people early in
the course of their disease, erecting greater barriers to its diagnosis is not
the solution. The solution lies in improving access to counseling and
testing,
expanding our educational efforts, and doing what we can to further
destigmatize HIV infection. The assertion that early diagnosis of HIV
infection now leads to life- and health-sustaining therapy is true, but does
not in itself justify the imposition of government mandates and involuntary
measures. Imposing bureaucracy and coercion on the struggle to control
the HIV
epidemic can only place more obstacles between us and our goal.